Sunday, April 22, 2012

Typical Versus, Well, Us

We are a very open family when it comes to sharing our experiences with special needs.  We don't hide the fact that our children have autism and sensory processing disorder and anxiety and depression and adhd.  We are very proud of our children, and these things are a part of who they are.  A large portion of my energy is poured into promoting acceptance and understanding of my children, especially when their unique needs cause them to behave in ways that are not acceptable to the world that doesn't know about about these disorders.

So, many a public excursion involves me explaining to someone that Munchkin can't help that he just (touched you/ bumped into you/ melted down in the middle of the aisle/ took your kid's toy/ issued an ear-piercing scream) because he has autism and is overwhelmed by what's going on around him right now.  And sometimes I receive a very understanding smile, or a verbal acknowledgement that it's ok.  But more often than not, the response is less than desirable.
"Are you sure?  He doesn't LOOK like anything's wrong with him!"
"Seems to me he just needs a little DISCIPLINE."
"Maybe you shouldn't bring him here if he can't handle it."
"My nephew has autism and he can't talk.  Your kid can talk fine--he doesn't have autism."
I will be the first to admit that our autism does not always look like anything remotely autistic-like.  Munchkin is a very normal six-year-old boy in many regards.  But he is also an autistic child in many respects too.  Check it out:

Typical Six-Year-Old Behaviors
Munchkin’s Take On These Behaviors
Licking an ice cream cone to see what it tastes like
Licking windows, cars, doors, people, the cat, and the table to see what they taste like.  Oh, and ice cream too.

Spinning until dizzy, then falling down giggling, just for the fun of it
Spinning for long periods of time without getting dizzy, not because he wants to, but because he feels like he has to.

Ignoring Mom’s request to clean up the first time she asks, then doing it when she gets the stern voice
Not hearing Mom’s request to clean up unless she first makes eye contact and gives you warning that you will be cleaning up soon, and then melting down if she doesn’t allow you to finish what you are doing.  And sometimes melting down even if she does.  And definitely melting down if she has to use a stern voice!

Whining about having to do homework before playing video games
Melting down every single night about having to do homework because it interrupts his desired video games, or even the thought of those desired games.

Occasionally putting shoes on the wrong feet
Purposely putting shoes on the wrong feet because they feel better that way

Learning the rules of the English language in order to read and spell
Struggling to read and spell because the rules of the English language don’t make sense to his literal mind that wants to sound everything out

Sleeping 10 hours at night
Sleeping anywhere from 5-9 hours at night, and only with the help of melatonin

Doesn’t know what stress feels like
Chewing his shirt constantly and obsessing over everything that bothers him in the least

Understanding that his friend is mad at him because he took her toy away from her
Not knowing why his friend yelled at him and tried to snatch her toy back after he took it away, because he only understands his own point of view, not that of another

Begrudgingly giving that toy back to his friend because he understands he was wrong
Having a meltdown over being asked to give the toy back to his friend, because it makes no sense to him that he can’t play with it when he wants to

Knowing that if mom says “In a second” when he asks for a drink, that she will get it for him in the near future
Counting “ONE!” after mom says “In a second” because one second has come and gone without her getting him the drink.

Hugging mom, dad, and sister because they’re family
Hugging strangers in the grocery store and the neighbor down the street because he likes to give hugs

Staying close to mom in a public place because he understands that he could get lost if he doesn’t
Wandering off in a public place because something caught his attention and he doesn’t realize mom won’t know where he is

Doing exercises in gym class
Doing exercises with mom every morning, and with an aide throughout the day, so he can focus at school

Following a daily routine because he’s been doing it that way for years
Following a picture schedule for daily routines that he’s been doing for years because he can’t stay on task without it

Tying his shoes
Wearing Velcro shoes still because we are years away from the motor control necessary to tie them

Occasionally using a word wrong, especially if it’s a new word he’s just learned
Using many words wrong, every day, because his brain jumbles them all together and he sometimes pulls a word that sounds close, but means something entirely different—even very common, everyday-use words

Enjoying going to the movies with the family
Avoiding the movies, because it’s too dark and too loud, and because he’ll talk and wiggle all the way through it and no one will be happy by the time it’s over

Petting the cat gently, or at least knowing to let go when it protests
Not realizing how tightly he is holding the cat, or that it can’t breathe, or that its hissing means “let me go!” and then not knowing why the cat scratched him when he was just showing it some love!

Showing love with hugs, kisses, and words
Showing love with super-tight hugs, a ritual of kisses, and, yes, words!

Yes, he's a typical child with some atypical ways about him.  But he's our Munchkin, and he's perfect in our eyes.  And I will never stop educating those around us about autism, because I want the world to see just how perfect he is!

Tuesday, April 3, 2012

A Letter To My Friends

My dear blog-reading friends,

It's been a long time since I've sat down to write.  That's because I've been so busy living life, and frankly, this winter has been a tough one for me.  Between work and health issues, we've been dealing with some new issues with both kiddos as well.  So time to myself has all but disappeared.  But life is slowing down again now, and I have so much I want to say and do and write!

But first things first...April is here again.  It's my favorite month of the year.  It's the month my baby girl was born (joy!).  It's the end of winter (blah) and the start of spring (yay!).  And it's Autism Awareness Month.

In our real, day-to-day life, we don't always feel a lot of support.  That's not to downplay those who do support us--we love and appreciate our parents and siblings, who are amazing with Munchkin and love him and embrace him for the wonderful child he is.  And we have friends who listen and try to understand what's going on with us, and continue to hang out with us, and love our kids.  We love our friends!  And we have a lot of friends that we've never even met, except on Facebook and in online support pages, who completely understand and support us.  We value them immensely.  

But the people we encounter everyday?  The ones who we see at church and at work and in the community?  Even our doctors and Munchkin's team of therapists and teachers at school?  We don't feel support from them much of the time.  And that's been one of my biggest struggles this winter.  That feeling of fighting for your child to be understood and accepted just as he is.  And this winter, we've had a doctor tell us that he doesn't think Munchkin's on the spectrum, that perhaps he was misdiagnosed.  (This, after just one hour with him...really?)  We've had teachers tell us Munchkin's just "playing us," that his "annoying" behaviors are things he could control if we were a little more disciplined with him.  We've had our OT at his school discontinue his services, because he's "just fine" and doesn't need any more help.  (Which has placed us back on the private therapy waiting lists, because, believe me, he still needs help.)  We've struggled to help him find his place in our church, because he doesn't want to be there anymore.  We've struggled to go to restaurants and stores, which we had figured out, but now cause sensory overloads again.  We've had to find different ways of discipline, of motivation, of calming him, because what worked once does not work now.  Parenting is exhausting work for anyone...but parenting a child with special needs is so much more.  More painful, more exhausting, more trying, more failing, more battles, more goals, more steps to reach those goals, more lessons that need to be learned and relearned and relearned... 

So that's why I love Autism Awareness Month.  Yes, I am committed to raising awareness about the early signs of autism, because I believe that the earlier it is diagnosed, the better the child's chances are of overcoming many of their obstacles.  And yes, I am committed to raising money and participating in research about autism, because there is so much mystery surrounding these children and how their brains work.  And yes, absolutely, I am committed to showing the world that our children are so much more than a diagnosis.  They are so much more than their behaviors, and their quirks, and their silences, and their stares.  They are amazing, brilliant, creative, beautiful children who experience the world so very differently than the rest of us.

But mostly, I love it for very selfish reasons.  April makes me feel less alone.  It lets me know that people all over the world are fighting to help their children fit in; to teach their friends and their communities to accept these awesome kids for who they are, not who society says they should be.  It makes me feel valued and appreciated for my hard work every day.  It gives me a purpose, something besides my kids to pour my energy into.  It allows me to make a difference, to share my story, to show the world my amazing child and to celebrate him.  And it brings some of our struggles, some of our pains, and some of our joys into the homes and lives of people who really don't know what life is like for us.   

But most of all, Autism Awareness Month makes me proud to be a part of the autism community.  None of us ever wanted to be members of this group of people, but we are.  And we are warriors!  We are strong, we are brave, we are mighty.  We band together and support one another.  We share a common voice and common goals.  We love our children just as they are.  We support them in a world that wants to change them.  We speak for them when their own words can't express how they feel or think.  We teach them and give them the tools to succeed in this world.  We know that our children are incredible, that everyone of them is valuable.  And we are proud, so very proud, to be the parents of a child with autism.

So check back throughout the month.  I have so much I want to say about Munchkin, about autism. I have this huge desire to show you all just how amazing my little guy is!  I hope you don't mind if I brag on him just a little bit now and then.  Love to all of you,